Amid the loss caused by ALS were important lessons on how to live
Even this cruel disease can't destroy love, laughter, and family
My late husband, Jeff, was diagnosed with ALS just before Thanksgiving in 2018. His diagnosis had come swiftly — we’d first heard mention of ALS in July and his illness was confirmed in October, backed by a second opinion in November. Because there’s no definitive test for ALS, for many living with the disease, a diagnosis can take a year or more.
Heading into the holidays that year, we felt many things, none of them festive. We were shocked, reeling, and devastated. We were not yet at the point where we’d developed the resolve with which Jeff, and therefore I, approached his ALS fight. That would come, but in those early weeks, we were bereft and, even together, feeling alone.
We were also living about 500 miles away from most of Jeff’s large family, the Sarnackis; they were in Michigan, and we’d recently moved back to Maryland. We’d kept his family apprised of his concerning symptoms and all the things they could possibly mean, but that process was enveloped in sadness after the second opinion at Johns Hopkins. Once his illness was confirmed, I remember that telling his family this devastating news — especially his adult daughter and son — was the thing he dreaded most.
Ready for some joy
Jeff was one of seven children, born exactly in the middle, a fact that he laughingly said made him the most well-adjusted of the bunch. As adults, everyone was pretty close, sharing holidays and gatherings as geography and growing families would allow. I can’t remember if we’d already decided to go to Michigan that Thanksgiving or not; we’d been so preoccupied. But I do remember the elation with which we headed to see his family that year. We were ready for some joy.
On the journey out, Jeff was more quiet than usual. We’d both been lost in our own thoughts for weeks, and his ALS diagnosis instantly and completely reframed our world and seemingly everything in it. I knew intuitively that reassuring his family and sharing with them the blueprint for how he wanted to approach life going forward was important.
Jeff’s sister Janet hosted Thanksgiving dinner that year, and there were at least two dozen of us gathered, from Jeff’s dad, who was in his 90s, to our youngest great-niece, who was 2. It’s a family tradition to hold hands and pray together before the Thanksgiving meal, and after we did this while standing in a loose circle around Janet’s kitchen, Jeff asked for some time to speak. He acknowledged the difficult diagnosis, which by then he’d shared individually with his loved ones, and then doubled down on his intention to live.
By live, Jeff didn’t mean he was going to physically survive ALS, although that was our fervent hope. What he meant was that for as long as he could, and for as well as he could, he was going to live his life, and he wanted us all to join him. Jeff didn’t want pity or to be handled with kid gloves. He didn’t want to be protected. What he wanted was to experience life fully and joyfully and with abandon. He wanted to embrace each day and for us to do it with him.
I’ll forever remember that scene as one of the defining moments in our nearly two-year experience with ALS. Many memories from those years are seared in my mind; some are traumatic, some are beautiful. That moment in Janet’s kitchen will stay with me forever as a moving moment of courage and grace, two attributes Jeff displayed in abundance during our family’s journey with ALS.
The rest of the evening was joyful. We enjoyed dinner together, told stories, and exchanged barbs on college sports rivalries (the most intense in our family being Michigan vs. Ohio State). Jeff’s niece had made blue bracelets emblazoned with “Sarnacki Strong,” and we all donned one in solidarity. Many of us never took them off again during Jeff’s fight with ALS. The evening set the tone for how his family showed up for us, and for one another, during what could have been the darkest days of his life.
Jeff’s ALS progression was faster than average, and he died at home in May 2020, surrounded by family. But for the life in between, there was laughter, time together, and gratitude.
It’s hard to find anything to be grateful for about ALS. It’s an insidious, cruel disease that robs individuals of their autonomy and cuts short cherished time. But in our case, it could not change the important things: love, commitment, laughter, and family. The first time I truly understood that was during that early Thanksgiving of living with ALS.
This holiday season, my fourth without him, I’m honoring Jeff with thanks and gratitude for the love and lessons he left me.
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